Tuesday, September 13, 2011

This is JoJo, my mother-in-law. This photo was taken when she was in her thirties, and she’s now 88 and suffering from advanced Alzheimer’s. She no longer knows her own children, or even her husband of 60 years, although occasionally there’s a rare moment of lucidity when, for a few precious seconds, some electrical connection takes place in her brain and she knows exactly who he is. I’ve met her many times, but I’ve never known her, because the disease had made its inroads by the time I met my husband. And yet, when I look at this photo (which sits on our mantelpiece) I get a sense of the person she was: warm, funny, loving, kind. Her character shines through, even in this posed studio shot.

It’s a sad end for someone so vibrant, and yet in one way I actually envy her. Why? Because I have never known a woman so loved. My husband adores her, as do his three siblings, and they all make regular visits to see her even though it involves a long journey (involving air travel for some of them) and she doesn’t know who they are once they get there. My husband often says: “She managed to love us all equally, but at the same time made us all feel as if we were the special one”. It takes an extraordinary person to do that.

Her husband, my father-in-law, is devoted to her, having cared for her himself at home for nine years and then, when it got to be more than he could cope with, visiting her every day in the care home and spending hours encouraging her to eat. He takes in little tidbits that he knows will tempt her, talks to her, holds her hand, and just generally loves her - we should all be so loved.

There’s a story I came across about an elderly man who needed attention to a minor wound. He kept checking the time and was asked if he had to be somewhere. “Yes”, he replied, “I need to go and visit my wife; she has Alzheimer’s and I visit every day”. When asked if she would be worried if he was late, he replied that she no longer knew who he was. The nurse was surprised, and said, “So you still go every day, even though she no longer knows you?” The elderly man replied, “She may not know who I am, but I still know who she is”.

This photograph, this face, reminds her family of what she was and who she still is somewhere deep inside. It also helps those of us who never knew her to feel that they do, just a little. That’s the extraordinary power of photographs. If I had my way, in the room of every person suffering from dementia there would be a photograph like this, to remind the nurses that they’re caring for someone very like themselves, who once had a full, rich life, told stories, created, loved her husband and children, worked, cooked, was funny, happy, and sometimes sad.

The woman in this wonderful photo by Cynthia Brown Images also has such a lot of character that we feel we know something of her even though she lives very far away from most of us, and in a culture very different to our own.

I worked many years as a nurse caring for dementia patients and know how difficult it is for those who love them. This description of love is so beautifully written that it went straight to my heart! So sorry for your family's loss...she was a lucky woman indeed!

Gilly, your story is so touching and loving and although written before JoJo's passing, a beautiful tribute. I lost both my grandmother's to dementia related illnesses, and they aren't easy. I'm so sorry for your family's loss and hope they are all well in this time of need.

Oh Gilly it is SUCH a wonderful perspective and lovely tribute...so sorry for your loss. You were envious of her since she was so loved, but your own amazing love was a part of that, and shines here. well done.

I totally get everything you said here. It could have been the story of my mom and dad. He took care of her for many years at home, and in the end, when she had to go into a nursing home, he was there every day feeding her. Those moments of lucidity you mentioned -- they were harder for me than anything else because I didn't want to let her go from a phone call or visit when it happened, knowing the next time I saw her, the knowing would be gone again.

It's a terrible disease, frightening for those who contract it and so deeply saddening for family members to watched their loved ones' spirit exiting their bodies. It's frustrating that so much time has passed without a cure or even an effective treatment.

Thank you all so much for your replies. I've just got back from Northern Ireland where the funeral was held, and the minister did a wonderful job of bringing out how amazing a person she was. He also made a very touching and well-deserved tribute to my father-in-law, who loved and cared for her so well and for so long. Dementia is such a cruel disease, robbing you of the person while they're still alive, and my heart goes out to anyone who's had - or is having - to deal with this.

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The Mortal Muses are nine female photographers from around the world. Each morning, one of the Muses posts a musing based on the previous photo submission theme and selects a companion photo from the mortal muses flickr pool to feature. We then move to the next theme.